2022

The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis

Publication: Rare Disease and Orphan Drugs Journal

2016

Giving Thanks for Progress: The New SMA

Publication: CureSMA Directions

 

2007

The Legacy of Alfred I. duPont and my Son, Jack

Publication: Published for the associates of Nemours Children's Hospital

 

2003

Spinal Muscular Atrophy Quality of Life

Publication: 
American Journal of Physical Medicine & Rehabilitation. ● Vol. 82, No. 2
 

2001

Welcome to our Home

Publication: Caring Magazine, National Association of Home Care & Hospice


 

2020

Strategies for Coping with COVID

Publication:The National Organization for Rare Disorders | NORD

 

2013

Connecting with the Heart of Home Care 

Publication: Caring Magazine, National Association of Home Care and Hospice
 

2007

What it Means to Care

Publication: Caring Magazine, National Association of Home Care & Hospice


 

2003

Keeping Hope Alive

Publication: Quest Magazine, 
Muscular Dystrophy Association

Pictured: Al’s daughter, Cara, together with Jack.

2023

Please view my presentations here